A project about disability in Western Zambia

Participation, yes! But of whom and in what?

Good news: the main purpose of my time here in Western Province seems to be coming together. I am now working with each of the two communities that participated in the research to develop a plan. We are now seeing small steps forward and promising windows of success. With the commonalities of the two groups, I have put them in touch with each other, and the leaders of the two groups should meet next weekend.

We are really making progress.

But wait: who’s we?

My University of Toronto colleague Gail Teachman once shared an insight from her work that I will paraphrase as “every inclusion is a new exclusion.” Gail’s purpose was not to get us to abandon trying to be inclusive, but instead to think beyond it. After long last, I am finding ways to include people in meaningful ways into my work, but Gail’s wisdom is coming back to me, making me think: who might be excluded in this process? And what to do about it.

Of the two questions above, I have thought more about the first; I suspect that reviewing it will take me closer to identifying answers to the second.

Persons with disabilities currently excluded from my work in Bulozi:

Anyone who is not a member of the two groups that participated in the research.

I mention this merely to be explicit about it. There are people here who might be seen as disabled, but maybe they are not part of a group because they hate collective organizing or do not see themselves as disabled (disability is not self-evident, remember). Some are members of other groups. Some might even be excluded by the disability groups with which I work; possibly the biggest concern of this category.

Group members with certain profiles.

In my research, the most apparent example of this were the group members who were Deaf. They were included in the sense that their names were on the membership list of the group, but their distinct culture and language kept them on the margins. Initially, they were even marginalized from my research due to a miscalculation about the availability of sign language interpreters. When I was finally able to hire a sign language interpreter, I learned that these folks experienced many of the same issues as other group members – except for their reports of social exclusion in the larger society, of which the disability group was also a part.

Group members proposing ideas that I find unpalatable, like requests for help.

I find this one particularly tricky. When I thought about it in more detail, I realized my preference to work with persons with disabilities who were “productive.” This realization was enough to fuel Chapter 6 of my thesis, available here. When I finally got around to engaging with thesis participants in ways that were meaningful to them (i.e., just now), there was a critical mass of group members interested in income-generating activities. These members tend to be the most active and vocal within their groups, making it understandable that these activities are now on the collaborative agenda for each group. Indeed, it is to discuss these types of activities that I connected the two groups (and offered to pay transportation costs).

Meanwhile, there is a much larger component of the group memberships that with minimal-to-know interest in income generation. During a recent meeting, a member of one of the groups reminded me of a plan that he preferred:

“You take our photos, photos of us suffering, and you show these to your friends in Canada. Then they will help us.”

I believe that this is the third time that he has suggested this to me, presumably with the thought that he might penetrate my thick skull with sufficient repetition. Unlike the first two times, which happened in the ‘every answer is a good answer’ environment of research data collection, I cut him off this time to state “NO! I’m not doing that!” Shortly thereafter, my vocal volume and pitch dropped back to more civil levels and I presented my rationale for refusing, the two components of which are basically described here and here. Hopefully, the strained interaction helped to establish me as a person with values, preferences, and boundaries – different from the question and answer machine that I was in 2014 – but for better or worse it also re-established me as being more powerful than others in the room. I bring a variety of resources to the table, and with those I have veto power, the power to exclude ideas.

***

The issues of exclusion, presented above, are not the type that would cause me to Stop everything! just yet, but they are still issues. They need to be addressed. In parallel to thinking more about this, I will continue to work with those people and ideas that are included. At this stage it seems inappropriate to exclude the pursuit of meaningful forward progress.

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Having trained as a rehabilitation professional, I was confident in my ability to answer the questions above. Sufficiently confident to travel outside my country of origin to improve the situation of persons with disabilities.Read more